Hemo dialysis and Disney World

[sweetb]

Hello all! I am wondering if there are any hemo dialysis patients who have gone to Disney World. I was planning on taking a trip to Disney with my children in May but my kidneys gave out and I have begun hemo dialysis. I know that it is possible to plan a trip and just have dialysis in Orlando but I was hoping to get an idea of how well things work out.

I was on dialysis for five years many years ago but never planned a trip during that time. This is my second time on dialysis and now that I have kids, I don't want life to stop.

Just wondering the basics of how well things went being at a strange center. Are they flexible in what shift they put you in. Still thinking about what would be best as dialysis totally drains me. Is it best to enjoy the parks by day and go to dialysis at night and then go right to bed? Or go early in the morning and let that be a relaxing hotel day? Also wondering how much harder the trip was due to the dialysis treatments.

I went last May with my kids and two cousins and I used an ECV which helped tremendously. In fact, I could never have walked that far had I not had one. I was in end stage renal failure then so things were still hard physically but I was able to do it.

I am hoping for an October trip with the hopes of better weather and less crowds.

Any advice would be very appreciated! Thanks!

 

[SueM in MN]

There are some links in post #3 of the disABILITIES FAQs thread to some past threads where people talked about dialysis at WDW. They don’t have the exact information you are asking about, but will be helpful until some posters with experience pop in.
You can find the disABILITIES FAQs thread near the top of this board or follow the link in my signature.

 

[Kinziepoohsmom]

I sent you a PM regarding my experiences with dialysis while at Disney

 

[Jedana]

My husband does home hemo dialysis.

You need to get your doctor to approve the tx at a Orlando center, and get your insurance's approval as well. When DH went to Vegas (when he was in center), he had to fit into their schedule, which meant one day at 10 am and then 2 days later at 8pm.

As far as when to do your tx, it depends on how it makes you feel. Dh always felt tired and worn out after doing a tx in-center; with home hemo, he is able to be up and going about 30 minutes after. If you are able to schedule it, I would go for the evening, though, so you would have a good sleep and be ready the next day.

We do a big tx before we leave, and then every other day while at WDW. We bring all the supplies with us in the car, though he can have them shipped there if he wants. We do let mousekeeping know that we will will have a large black trash bag every other day, and they seem fine with disposing of it for us. They never mess with the machine or the sharps containers. We usually do his tx at night, so we'll eat, come back to the hotel and get him on, then watch some tv, just like at home.

 

[sweetb]

Thank you for the advice! I thought it would be better to go at night too so I could rest for the rest of the evening and then be good to go the next day. The only thing is having to miss whatever evening show is going on at each park that night. I guess if we plan well, we can be sure to catch the shows on the nights we will be at the park.

 

[Brandi1leigh]

I'm very interested in what your experiences are. Please report back once you've made the trip. I'm on in-center hemo and have been reluctant to plan any trip away from my home center. But I love Disney and have been trying to plan a trip. I'm very interested in what the center is like! Sorry I can't actually help answer your questions, but know that you aren't alone.

 

[Brandi1leigh]

Sorry, I forgot one thing. Yo umight want to check out the "I hate dialysis" website. They have a traveling board that has some Disney specific threads.

 

[okcarrie]

I did hemo at Celebration Dialysis (Davita) back in Sept of 2007. The center was a little tricky to find at first, but it really wasn't far from the parks/resorts. I did not get to choose times. They assigned me 6am for two days and and one at noonish one day. The only time that worked well for me was the noon time because we had young kids and like to hit the park in the morning before it was hot and it was nap time. Also I was usually completely drained after dialysis, so those two morning days were pretty much a bust for us.

I have no complaints about the clinic or the actual dialysis I recieved. It was clean, staff was nice and they didn't take too much fluid off of me which my home clinic was prone to doing.

I switched to PD a couple months later and I have three trips and a few cruises under my belt while on PD, so I can answer questions about that too.